Unbelievable Update

I am so so sorry for not updating in so long!

When I first started writing this blog, I was absolutely obsessed with my condition and learning about it and creating awareness and finding a "cure."

I realize now (and truly believe) there is no cure. That sounds depressing, but keep reading, because there certainly is relief!

It's been a few months since updating, I think my last update involved physio and some new dilators. The size 1 silicone dilator is about the length and diameter of my pink finger. Not very big for most, but when I first saw it I almost started crying anticipating the pain.

Believe it or not, I can currently insert the size 4 dilator with virtually no pain!

Physio was stressful for me, especially when I started bringing my dilators. The usual appointment involved my physio doing some Connective Tissue Massage (CTM) on my legs and then inserting the size 1 dilator or her finger for internal CTM. The anxiety was unbearable, until I suggested that I insert the dilator and then she do the internal CTM. That was the change I needed, I was not as anxious to insert the dilators on my own.

Now, like I said, we're up to the 4th dilator at one appointment a week (now once every two weeks).

AND my partner and I have even successful attempted and completed intercourse! I quickly insert the largest dilator I can handle and then we have sex. It's still painful at first, but once we get over the initial "hump" (I call it the hump because literally, deep within my vagina I feel like he has to push past/over this hump) ... and once he has pushed past this extremely painful physical hump/lump in my vagina, the pain instantly disappears and we can actually have sex!

My new problem is that I never remember. I remember having sex, I remember thinking it felt nice, but I cannot actually remember how it felt or whether or not I enjoyed myself. I contacted my Psychologist about the issue, and she has asked me to pause during intercourse or foreplay every couple of minutes to check in with myself and my partner to see how I'm feeling. This will tell us if I'm disassociating completely during intercourse or if it is some sort of amnesia.

EITHER WAY my pain has significantly decreased! Like I said earlier, I don't think it will every be cured, I think this will be a type of pain that I will need to maintain and manage for the rest of my life and as long as I keep up with dilating and possibly some bi-yearly or every few months have some physiotherapy, the pain will remain controllable.

My advice to anyone with pelvic pain similar to my own is to try these techniques first (especially before considering surgery): seek a sexual psychologist, find a pelvic physiotherapist, keep all doctors involved communicating and sharing ideas and achievements, buy a dilator set (silicone was the best choice for me because of mental blocks for fingers and stiff items, the silicone was smooth [i.e. not sharp looking] and flexible), and use an all-natural water based lubricant. You have to want the pain to go away, you have to be open, because if you aren't, no treatment will help and in fact your pain will grow and get worse. Mine almost went from 4/10 provoked vestibulodynia to 8/10 unprovoked vestibulodynia (numbers out of 10 based on the average pain I felt over the time periods I had them). Now I'm back down to only having unprovoked pain, and it rarely goes beyond a 3/10.

Please leave comments, ask questions, share you stories, I still want to raise awareness, help anyone I can, offer advice or just an ear to listen!

One Step Forward, Two Steps Back...

                I am sorry I haven’t been updating a frequently. A lot has been going on between school and work. As for the vulvodynia though, things have been very positive until today.

                All my pain along the vulva and labia are gone. The only thing I haven’t tried and am still very scared of is penetration. The first physio appointment where we massaged my perineal gland was very positive, virtually no pain. A couple weeks ago when we tried, a bit more pain (a stabbing, knife like pain, probably 4/10 – uncomfortable but bearable).

                Today we tried again (haven’t been able to the last week due to my period – yay.), she had to stop, I couldn’t relax and it was too painful. I didn’t ask her to stop, I could have continued but she didn’t feel comfortable or that it would be beneficial, so instead we did our connective tissue massage and she asked me to work on my focus and cognitive thoughts on relaxing.

                What a downer! Everything had been going so well: I don’t need to see the psychologist anymore except for follow-up, not exterior pain, no flare-ups, but apparently still an aversion and pain for insertion. She’s only been using her finger, so I am not even capable of dilating yet. Guess back to the cognitive drawing board.

                I’m going to make a goal until our next appointment to take 5-10 minutes a night to do some self-exploration down there while focusing on my thoughts and relaxing my muscles. I’ll let you guys know how it goes.

Others' Pelvic Pain - Male Pelvic Pain and Unprovoked Vulvodynia Stories

Recently I've had the opportunity to be in communication with two strong individuals each undergoing their own pelvic pain journey.

I discovered Robert's website through a PT's twitter account. Robert has a great YouTube video: Robert's Video
And he also has started up a blog to document his successes, symptoms, treatments, etc. Along with some other individuals stories (male and female): Male Pelvic Pain

Here's Robert's story:

About 6 months ago I woke up with pelvic pain.Initially my family doctor was convinced I had an infection causing my penile ache and testicular pains. I was prescribed a 10 day course of antibiotics (doxycycline) and sent on my way. These did not help at all, about a week into the antibiotics I ended up in the Emergency Room with severe testicle pain. They did an ultrasound and found no abnormalities, the doctor in the ER prescribed my a different 10 day course of antibiotics (levoflaxin) and sent me on my way diagnosing me with a testicular infection called epididymitis.

A few months went by and I still had debilitating testicle pain and penile pain so I scheduled with a urologist, I thought that surely this would be the solution to my problem. He spent about one minute examining me, checked my prostate and my testicles only to tell me there was nothing wrong and he thought it was all in my head. He asked if I had "contacted any hookers in my area," or "Been through a recent breakup." It was a very depressing visit and I was left, again, with no answers.

I immediately sought to find the most knowledgable urologist in the city, so I scheduled an appointment with the director of urology and urological surgery at the largest hospital. We scheduled another scrotal ultrasound and a kidney ultrasound, both were normal. We scheduled a cystoscopy where the urologist uses a flexible scope to look inside my penis, all the way to my bladder. Nothing was abnormal, the surgery left the urologist telling me "I'm sorry I cannot help you."

By this time I had already came across pelvic pain and pelvic floor dysfunction on the internet as a possible cause for pain in the private area. I asked for a referral to the only pelvic floor specialist in the state and he angrily told me NO. He did not think that was my problem and he began to degrade physical therapists saying, "They are not doctors, they cannot help you." He went on to tell me, "You should not be diagnosing yourself or looking for answers on the internet." I was naked, other than a hospital gown and I had just undergone a very personal and painful procedure and he was yelling at me for requesting a referral and trying to find someone who could help. He left me in tears and prescribed me medication for men with enlarged prostate even though I had no prostate issues. I tried the medication, I got dizzy and nearly fainted each day that I took the "alpha-blockers" so I stopped after 4 days.

I then went and contacted the pelvic specialist. Based on my symptoms she told me she believed PT could help me at least some, and she has 3 male patients on her workload already. The first appointment we noted my pelvic floor muscle activity was 10 microvolts, 2 microvolts is normal. This meant my muscles were in constant spasm. Through biofeedback and trigger point release, the internal kind, my baseline has decreased on the "Chronic prostatitis/pelvic pain" scale from a 31 to 25. I've only been going for a month or so. I also found that the PT I'm going to hosts a pelvic pain support group monthly in their lobby, although I'm the only male I found the females to be very supportive and the first meeting we spent 2 hours discussing our stories. I plan on going to all the future meetings.

I hope biofeedback and internal release has benefits for anyone else suffering. Internal myofascial release has shown the most improvement in pelvic pain in all the studies I've found. I know how demoralizing and stressful all this can be. There is not a cure for these types of conditions, so striving to maintain happiness is all we can do. It's nice to see that others are making the most of their experience. Together we can fight Chronic Pelvic Pain.



The next person I spoke with was Desiree, she sought me out and we e-mail back and forth frequently. She recently started her website (Our Pelvic Pain Stories) where she is posting other pelvic pain stories (including mine and Robert's).

Here is Desiree's story:

Hello, my name is Desiree, I'm 20yrs. My pain started at 14yrs old after being prescribed birth control for premenstrual dysphoric disorder. Soon I developed yeast infections then bacterial infections. Finally after several months my doctor decided to check me again for either yeast/bacterial infections and to both of our surprise there was nothing there. She then said you have vulvodynia.......I was in shock because I've never heard of that before.I decided I needed a second opinion so I went to shands hospital and was told I needed to work through the pain however pushing through my pain makes it worse. Next was florlida hospital where I was told I had an STD which was totally insanse because I'd never had sex. Needless to say we didn't go back there. From there we went to Miami where we found a doctor who was suppose to be educated but ended up causing more damage with steroid creams. I searched for days on the computer for a doctor who could help me and finally came across an educated doctor. She did the q-tip test which was very painful which is why I found out I had vestibultis, but I also have vuvldoynia which is unprovoked pain. She was able to rule out any infections and skin conditions by taking several biopsies. After starting medications she sent me to physical therapy, I was very nervous as I was thinking how awkward this would be (I was only about 15 at the time) but she is a wonderful therapist and made me feel comfortable.....I went to her for 3 or 4 yrs and have made a lot of progress over time. The pain was still intense even with PT and meds so the next step was to try nerve blocks and trigger point injections. Those gave me a little relief but not much. Next I decided to try a neurostimulator for pain before urination....that was the worst surgery I've had, because I had to be awake for part of the surgery. I just remember sobbing and feeling pain. Once I healed, the box located in my back wasn't working properly. It shocks me and is slowly bulging out of my back so I'll be having it removed very soon. Finally after a few years of every treatment available (except Botox...insurance won't pay) we decided to do the vestibuletomy. The surgery went perfectly, and I healed very well. The surgery did take the edge off my pain which I'm very happy for but still in terrible pain. Since then I've been continuing therapy and looking and hoping for new treatments that will be becoming available.





Please check out their websites, and if you have a story to share contact Desiree, Robert and I. We all have the same goal: To raise awareness and offer support when we can!

HOLY MOLY I think my pain is decreasing...

Sorry I haven't updated in a while, I got my dilators, I even took pictures for you guys but my laptop USB cord adaptor doesn't seem to be working, so I'll post pictures as soon as I can. I haven't used the dilators yet though, soon! Within the next couple weeks.

But Holy Moly, amazing thing after amazing thing keeps happening!

Two nights ago, I was in the bath and I touched just about every possible area on my labia, I touched the vaginal entry and I touched the clitoris (I was and am most scared about that spot) but there was no pain!

Last night, before going to sleep I just let my hand and finger sit down there, I pulled the skin back near the vaginal entry, I touched, no pressure and no pain.

This morning I had my physio appointment, and she was amazed at what I was saying (I brought the dilators to the appointment), she decided she would try some connective tissue massage with her finger today. I was super nervous! She was good, took it slow, told me each step she was doing as she did it, etc. She was putting pressure on the perineum, and I believe she inserted her finger slightly into my anus to put pressure on the pelvic floor (I’ll have to confirm, I was pretty distracted with self-talk and deep breathing and didn’t quite hear everything she was saying). Buuuuuuut... I felt NO pain!!!! She only did the pressure massage for a couple minutes, but it still seemed like an amazing feat. She said she may try with the smallest dilator next week or may do more with her finger. Either way I left feeling quite excited! I just can’t wait to see if this improvement continues! My fear is starting to dwindle away the more these events happen, but I still feel a bit of fear lingering about the dilators.

Haven't tried vaginal penetration yet, but I still can't believe there's no pain around the entry... I'm just, I don't have words to describe how I feel.

Thanks to all of you for your ongoing support! I will continue to update, I've also had a couple of readers share their stories with me lately and have gotten their permission to share their stories in a post. Because my story doesn't necessarily relate to everyone reading, each individual I talk to seems to have slightly different symptoms and treatments. So hopefully these stories will help others that suffer slightly differently than I!

Thanks again everyone!

More Dilator Tips!

Found this great article this morning! My dilators are in shipping, should be here any day, excited and nervous.

Also had my first physio appointment last week, felt horrible doing the connective tissue massage (I've always disliked that part) but the aftermath was great, felt really great the rest of the day!

How to be Successful with Dilators

Lidocaine and our Neurons

All my treatments are going to be starting back up in the next couple of weeks and I will have more to update you all on then!

Until next week though, I have an interesting fact to share with you, that I learnt today about lidocaine ointment.

My description below may not be entirely descriptive, but it's the way it was described to me:
Lidocaine acts as an anesthetic by blocking sodium channels in our neurons (in our axons of our neurons). But for the drug to actually work, you must depolarise the neuron first! Well how do you do that? After applying the lidocaine, you must actually provoke the pain you're trying to numb. By causing this pain, the neurons depolarise, the drug moves in and blocks the sodium channels, and we get the numbing sensation that blocks our pain.

I'm wondering if this is partly why I never found a lot of relief from the lidocaine (or thought I didn't find relief). I expected it to prevent all my pain before actually causing the pain. The moment I felt pain, I stopped any penetration causing it and came to the conclusion that it wasn't working.

I may have to give it another try and remember this little fact. Quickly cause a but of pain after applying it, then the numbing/pain blocking will take place.


Something quick and extra I found - Wikipedia definition of how lidocaine acts as anaesthesia: Lidocaine alters signal conduction in neurons by blocking the fast voltage gated sodium (Na⁺) channels in the neuronal cell membrane that are responsible for signal propagation.^[28] With sufficient blockage the membrane of the postsynaptic neuron will not depolarize and will thus fail to transmit an action potential. This creates the anaesthetic effect by not merely preventing pain signals from propagating to the brain but by stopping them before they begin. Careful titration allows for a high degree of selectivity in the blockage of sensory neurons, whereas higher concentrations will also affect other modalities of neuron signaling.

Fear of Pain

                Again, sorry for only just updating you all! I saw the psychologist on Tuesday, and we actually finished our two hour appointment early! We’re running out of things to discuss and work on, treatment has definitely been working, and the biofeedback only gets better and better each week we do it (taking a break until the new year though).

                One thing we discovered in my psychologist appointment though is that I seem to have a fear of pain, but not all types of pain. She wanted to try an exercise where we would hold our arms straight out to the sides for three minutes and notice and discuss our thoughts about the pain, but the problem for me is that I am not fearful of that aching pain. I’m fearful of stabbing pains. The stabbing I get in my vulva/vagina, the stabbing from the needle of a blood test, pin pricks, etc.

                She didn’t quite understand why I was fearful of one and not the other, but she did give me an assignment! For a few days straight, I am to use a toothpick and poke myself on the arms, the stomach, the legs, hands, etch to see if I can reduce my anxiety level of that sensation, and once the anxiety level has decreased, to use the toothpick to poke more sensitive areas (areas with more nerve endings) like my lips, or my breasts. The more I do it, the more I might find that it’s not painful and that it just gives a sensation!

                I haven’t started yet, but I’m excited to because once that anxiety decreases I can really start to localize my vaginal pain. As of right now, I’ve discovered I don’t have pain between the sides of my clitoris and my labia, but I’m worried I have pain at the base of my clitoris and so have been avoiding the area and been too scared to touch it to even discover if it’s painful or not.

                That’s all I really have to say! I feel like my pain truly is decreasing! Even though I didn’t really have a baseline. Life has been good, excited to start again in the new year with my treatment.

                Merry Christmas guys (and happy holidays) AND Happy New Year!

                Psychologist: $225.00

                Transport: $52.00

                Total for the day: $277.00

                Total Psychologist fees up until today (not including travel expenses): $975.00